With the recent publication from the NICHD network concerning survival rates of the most immature infants, there has been a lot of discussion. Including a strange article in “the Daily Beast”, by Jeff Perlman. Why he would publish something there I don’t know, but his argument is weird. He basically doesn’t believe babies can be viable before 23 weeks (he says that at his hospital they have decided that viability is at 24 weeks), and notes that there are uncertainties in gestational age assessment. But he is extremely inconsistent and then argues that we should use that same uncertain assessed gestational age to decide whether a baby should be given a chance of survival, using completely arbitrary cutoffs that reflect the traditional gestational age mantra. If gestational age assessment is so problematic (which I agree with entirely) how can we use that as the over-riding consideration in whether an extremely immature baby is offered intensive care or not?

He goes on to suggest that the data are biased because they are observational; which is also a strange argument. They are supposed to be observational. The data show that, among babies who are born in centers where almost all “22 weekers” are resuscitated, 23% survive, in centers where they are more selective the average survival among infants getting intensive care is 28% but the overall survival is much less, depending on the proportion getting intensive care. In centers where 0% are resuscitated, then 0% survive. I don’t understand where the bias is there. The data are clear and irrefutable, there is huge variation in the approach between centers, and huge variation in survival as a result. Sure, some of the babies who survived who were called 22 weekers might have been 23 weekers, but some of the 22 week babies who were not offered intensive care, and therefore died, might also have been 23 weekers (or even 24 weekers).

Dr Perlman’s article ends by saying that, based on his decision that viability starts at 24 weeks, they will not offer intervention before 23 weeks at his hospital, nowhere does he suggest that parents have been involved in making that decision; I guess the doctors know best.

There have been a lot of comments on parent blogs, including for example “life with Jack” and “they don’t cry“, many of which point out the stupidity of relying on inaccurate information to make life and death decisions, and the fact that survival with impairment is also a success, for many families.

Annie was interviewed about some of this recently on the radio, which reminded me of a recent radio program, in which I made a brief appearance, Radiolab, an NPR radio show that is generally very interesting and well made. When I was on the show, which was triggered by the experiences of a journalist who had an extremely preterm baby, I was asked to be there for my opinions about the story. Towards the end, I was not expecting a certain question, which was how Violette was doing.

I probably should have been ready with a glib answer, but I just stammered a little not knowing how best to answer, then I said simply, that she is ‘perfect’. After the show there were numerous comments, on the website, which implied that the producers of the show had selected families whose infants had unusually good outcomes. I am not going to give a lot of personal details about Violette, and how she is doing, because that is something that is actually irrelevant to this debate. I do want to try and answer the question, also addressed on “Life with Jack”

“Does anyone have a ‘perfect’ baby?”

I have several

Or maybe I have none

We are extremely fortunate that Violette does not have a major neurological deficit. But even if she did, can a blind baby not be perfect? Is it impossible that a child with cerebral palsy is perfect?

My daughter will, in all likelihood, struggle more in school than if she had exactly the same genome, but been born at term. Does that make her less perfect as a result?

Not to me.

She is my gorgeous little girl, whom I love without limits, and who has a wonderful life ahead of her. To me she is perfect, despite her imperfections. Just as are my other children.

I am glad that I stammered and said she was “perfect”, I can’t think of a better description of her.

Today is her tenth birthday!